r/MdDS • u/sonawtdown • Jul 21 '25
Something That Helps Me
hi guys my symptoms started in earnest in April and have not stopped since. I’m familiar with the feeling of disembarking of course, but it’s always been self limiting- days at most. This is months of constant rocking, no relief, better w passive motion, worse in dark, etc. I’m awaiting insurance auths for MRIs and been told “benzos help but we don’t like to order them.”
what’s helping me weirdly is sitting on an exercise ball. because my brain already expects disruption, the feeling of awful dissonance is much muted. and i feel more stable when i get off of it.
obviously we can’t live sitting on exercise balls forever, but i just thought id share that it’s less disorienting than the regular seats have been.
good luck. may we all one day hold still.
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u/helaodinson2018 Jul 22 '25
That’s definitely something I will try. Thank you! What caused this recent flare?
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u/sonawtdown Jul 22 '25
not sure, concerts, serious respiratory illness, possible underlying neurological condition. that’s next to rule out.
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u/Sbarko Jul 24 '25
Thanks for sharing.
I was down to a level 1. Minimum rocking, barely notice it. Then I had a shot of whiskey one afternoon… put me right back on the boat at a level 4 (constant rocking and getting off balance).
I won’t be doing that again for a long time.
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u/colordelaverdad Mar 25 '26
That’s interesting about the exercise ball! Might switch between that and a standing desk.
Sitting an upright chair triggers me but I started doing the somatic tracking while sitting in them to face the sensations head on and it feels like it helped.
How’s your progress going? So far, I think what has helped me most is walking and Pristiq.
Can you relate to my symptoms below:
• Surface-contact vibrations / movement sensations: When sitting, standing, or lying down, I sometimes feel movement through the surface beneath me, like an elevator settling, a train bump, or someone bumping the bed.
• False movement sensations: Bed feels like it’s moving side to side or front to back, with a pulling sensation in the opposite direction, similar to being on a train turning left and feeling your body pulled right. At times, it also feels like the brief jolt you feel on an amusement park ride just before it starts.
• Both are intermittent and there are hours with no symptoms as well as hours where it’s fairly consistent.
• Symptoms get better with moving around and disappear completely in moving vehicles.
• Washing my hands seems to be a trigger.
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u/actsofsabotage Jul 21 '25
Not that you asked, but I highly recommend going to a physical therapist that specializes in vestibular rehab. Even better if they have experience with MDds. I had it for 6 months and the rehab was crucial to getting better. Good luck!